Hi.

Apr 4 Thumbs Up

Today was 👍🏽, in terms of recovery. Avery is doing exactly what she needs to do to heal and tolerating everything like the champion that she is. We've slooowwwly begun introducing her normal feeds and she's receiving staggered Tylenol and morphine for pain management. Any CVR/FOA is hard, but surgeons described this as "reconstructive surgery on steroids", because of everything that was involved - cutting the scarred bone from the dura from a previously aborted surgery, donor bone grafting, to name a few. Her eyes are not even just simply swollen shut, as they are after simple orbital advancements... but, I'll spare you those details. 😉 Because she can't see, she constantly wants human touch for reassurance and I've been talking every second that she's awake - "reading" her favorite stories (aka, reciting them from memory 😂) and telling her our every move so that nothing surprises her, as even having her mouth wiped unexpectedly causes her to panic.

Tomorrow will be the first time her incision dressing is changed and I'm anxious to see how it looks. Avery's surgeons were able to get so much forward expansion (🙌🏼) that her skin had a hard time closing - a concern of ours going into this surgery. Her forehead was previously so pinched that her skin has never had to stretch appropriately (besides hydrocephalus episodes), potentially limiting the surgeons.

Any incision has the potential to introduce infection, but the location and tenuous nature of her bicoronal incision has me feeling the pressure. We are not looking to repeat last year's septic shock episode.

Another concern is leftover debris or clots somehow clogging part of her shunt catheter - a complication we experienced after her first CVR/FOA at 4 months old (our 2015 "coma admission"). Hydrocephalus can "hide" easily after these kinds of surgery because the displaced bone can expand without showing the classic sign of a protruding soft spot and tiredness and lethargy are to be expected during recovery, but are also signs of mental status changes that occur with intra-cranial pressure.

But, these are all possibilities that we know from our previous experience, and not especially likely if she continues recovering as well as she is. I always have to walk the fine line of anticipating issues with discernment and sharp eyes, without borrowing trouble or living in fear. There is grace for crisis as it arises, but there is no grace for a phantom crisis of the mind that has not materialized - those can drive you crazy and serve no purpose. They distract you from the present and rob you of the peace necessary to stay afloat.

Obviously, I'm exhausted and would love your prayers for supernatural energy and protection from sickness. I was very ill for several weeks before coming to the hospital and I'm feeling the strain of surviving on ICU-stifled naps and holding a 2 year-old in an uncomfortable chair for hours at a time until I can no longer feel my arms and legs. I have to be up to hold her hand or have my face againsts hers whenever she stirs and cries out in the night so she knows that I'm there... aaaand I'm tired and it's only been one night! 😂

(These, ☝🏽of course, are minor, silly complaints compared to what my daughter is facing, but I've learned it's okay to admit that this is really hard for me too.)

Thank you for all of your support. Each comment and message means SO much to me and seriously boosts my spirits. I can't wait to read them to Avery when she's older. I can't wait to tell her of the community of strangers who invested their time and energy into loving her from afar.